Today I got an email from the Work and Income Service Centre Manager, letting me know that my Disability Allowance has been altered, and I will once again be receiving the maximum entitlement.

I sort of didn’t know whether to laugh or cry. I think there’s a risk of this being considered a “conclusion.” Of this being a story where I complained, I got an apology and the service I was denied, and I accepted that.

I can tell you now that that’s not going to happen.

As much as I thank the people at WINZ Nelson (not the entire organisation, note) for taking the time to respond to my case, I’m very interested in the fact that it took a massive amount of publicity, work, support, and media to get that to happen – along with considerate cost to my personal health.

This fact only reinforces for me how broken the system is. It should not be necessary to fight so hard and so publicly to get support, especially when you’re needing the support because you’re unwell.

All this does it make me think about all the people who don’t have the resources I do. Who don’t have the loud voice. Who don’t have the support of a really great community. Who are so defeated by bureaucracy that they give up, and stay silent, and miss out, and struggle on.

As I was receiving my apology, I wondered – how many other WINZ clients get an apology from a Regional Director? Definitely not as many as deserve it.

I think there’s also a risk of this story being seen as very transactional. My entitlement was removed, I complained, they gave it back. Done. Shhhh, girl. You got what you wanted.

No. That’s far too simplistic, so I thought I’d just do a quick recap.

1. My Disability Allowance came up for review at the beginning of February. As soon as I heard this, I knew the process wouldn’t be smooth. I knew this would be an opportunity to remove support. That’s the culture of fear that a beneficiary lives in.

2. I did my absolute best to provide the documentation WINZ needed. I respect that they need it. I’ve written before about how difficult this all is for a sick person so I won’t go into it again – but it’s hard. The uncertainty, the stress, physically collecting documents to take in. It’s really hard.

3. Despite doing this, I had the experience that caused the post that finally got their attention.

4. My Disability Allowance was reduced, which I had expected. I wasn’t able to provide enough documentation to hold onto it. The option was to try and make up some of what I had lost with a Special Foods Grant. I didn’t apply for the grant because of the experience I had. Because I got given yet another form, requiring my doctor’s signature. The idea of filling it out, going to the doctor, getting receipts, going back to WINZ – I just couldn’t bear it. I was so tired, and so sore, and so defeated.

5. After the response to my very public complaint, I had a new appointment with WINZ yesterday. Suddenly, I didn’t need that form anymore. My Case Manager worked through the Special Foods application with me, as well as other entitlements. They couldn’t be helpful enough. I was there for two hours while they tried to be helpful.

6. As a result of the Grant, and also some additional transport costs, I can now make up the portion of the Disability Allowance I lost.

7. I would not have been able to do this on my own. As I said, I’d given up. I’d accepted that I was going to lose that money. How many other people have done that? How many others just don’t have the energy to fight?

We shouldn’t have to fight so hard to get support we are entitled to. 

My frustration was and is far larger than me. It doesn’t matter who I’ve talked to about this – everyone has their own story to match. Or they said things like “Oh yeah, well you know WINZ. What do you expect?”

The answer is, I expect better.

I could stop now. I’ve got the money I needed. I’m actually in a far better position than many people. For one thing, I’ve got well enough so I can even fight like this, because even two months ago I would not have managed it. If you’ve been following me for a while, you’ll know what a mess I’ve been – physically, mentally, and emotionally. And yes – to the people who say to me: well, if you can do all this, you can go back to work  – to them, I say: well maybe I can, really soon. I have a lot of hope. I didn’t have it, for a while. I felt like I was never going to get any better. I’m still in constant pain, and I’m so, so tired, and this whole thing has been so massive and scary and I just wish I could crawl into a blanket and stay there – but I’m not going to.

I’m not going to give up now. I’m not going to go away. I’m seeking advice on the best way to get the stories I’m being sent heard. This may be a parliamentary petition. It may be passing them on to specific MPs. I’m not sure yet. But I don’t want my story to be the only one that gets a response.

Again: I am collecting stories of WINZ mistreatment. You can send me yours. 

Thank you so much to the people who have been brave enough to do so already. I am reading them all, and I apologise deeply that I can’t respond to everyone individually. I am hearing you. You matter.

Thank you.